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My name is Dawn and I am the mother of an 11-year old girl named Hayley. I came across Katie's Health Journal while doing some research on the internet.
My name is Dawn and I am the mother of an 11-year old girl named Hayley. I came across Katie's Health Journal while doing some research on the internet.
Hayley has been on medication for complex partial seizures since she was 7 years old and was for the most part seizure-free until last year. In June, her dad and I realized she was having seizures when she slept--6 to 8 every night. She even has seizures when she lies down for a nap. Eventually, she started having them while she was awake, also.
Until this year, when she started in 6th grade, her epilepsy has not interfered with her schooling at all and she has been an A/B student. Unfortunately, a combination of medication side effects and the uncontrolled seizures is taking its toll on her schoolwork.
We have gone through trials of various anti-seizure meds at various doses, and nothing is controlling her seizures, although right now her daytime seizures are mostly controlled. Her local pediatric neurologist referred us to Dr. Chugani because he was out of ideas. According to Dr. Chugani, since she's failed so many different meds the odds are she will never be controlled on medications alone.
Right now, we are in the process of evaluating to see if she is a candidate for surgery at the Children's Hospital to remove the seizure focus, and hopefully one day be seizure free and medication free. She has had a video EEG and a PET scan, and there is a strong focus in the right temporal lobe. Her father and I, as well as Hayley, are very frightened about this possibility.
I realize the reason behind Katie's surgery was a tumor, so her situation is a little different than ours. However, it was very comforting to see how well she was doing after surgery and the immediate recovery period. If Hayley has the surgery, it would also be a 2-stage process with the grid mapping. I would like to use Katie's Health Journal to show my daughter how well she is doing now and hopefully ease some of her fears.
I hope you and your family continue to enjoy good health. I wanted you to know that Katie's story is still benefiting others.
***************************THAT'S WHY!
As long as this blog can be a blessing and an encouragement to folks like Dawn and her daughter Hayley, then I'll keep it up and running.
All because of God's Amazing Grace!!
